Elsevier

Epilepsy & Behavior

Volume 67, February 2017, Pages 133-134
Epilepsy & Behavior

Editorial
Bad information in epilepsy care

https://doi.org/10.1016/j.yebeh.2016.10.022Get rights and content

Cited by (11)

  • EEG parameters as endpoints in epilepsy clinical trials - An expert panel opinion paper

    2022, Epilepsy Research
    Citation Excerpt :

    The current gold standard for the regulatory approval of new antiseizure medications (ASMs) and antiseizure devices (ASDs) by the FDA and EMA is the demonstration of reduction in the frequency of seizures assessed by using the seizure diary (Blachut et al., 2017; Hoppe et al., 2007). It is acknowledged in the epilepsy community that whether by self-reporting or by that of an observer, seizure diaries significantly underestimate the true frequency of countable seizures (e.g. tonic, clonic, tonic-clonic, atonic, focal motor, epileptic spasms) (Blachut et al., 2017; Hoppe et al., 2007; Fisher, 2017; Fisher et al., 2012) and provide little or no ability to count seizure types which are difficult to detect or quantitate (e.g. absences, myoclonic seizures and focal unaware seizures without or minimal motor components) or have no observable manifestation at all (e.g. focal aware seizures with sensory, cognitive, affective manifestations). The difficulties of self-reporting are particularly pronounced in the pediatric population, especially in younger children (Akman et al., 2009) and in patients with intellectual disabilities regardless of age.

  • Seizure documentation in people living with epilepsy

    2021, Epilepsy and Behavior
    Citation Excerpt :

    More research is needed to understand the true impact of these tools on persons living with epilepsy. Some have even suggested de-emphasizing seizure counts in favor of other “global measures of well-being [33].” However, in the meantime, the seizure diary subgroup attending the National Institute of Neurological Disorders and Stroke (NINDS) conference in 2012 made twelve recommendations pertaining to seizure documentation in clinical research [32].

  • Digital tools for epilepsy: Opportunities and barriers

    2020, Epilepsy Research
    Citation Excerpt :

    Although often discussed separately from self-management topics, the use of trackable data metrics is an increasingly critical element of optimizing epilepsy care. It is well known that patients have difficulty with accurate seizure recall, either due to the nature of an individual’s seizure types or simple recall bias (Fisher et al., 2012; Fisher, 2017). Additionally, medication adherence remains a challenge for many patients, with even a single missed or improperly timed dose potentially leading to a seizure (Paschal et al., 2014).

  • Seizure detection devices for use in antiseizure medication clinical trials: A systematic review

    2019, Seizure
    Citation Excerpt :

    The evaluation of anti-seizure medication (ASM) efficacy during clinical trials hinges on collecting accurate and consistent patient-reported outcome measures (PROMs) [1,2].

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